Originally, vacation was supposed to last 10 days, but the oncologist told us today we need to start treatment sooner. He also said that she is still anemic and in danger of overstressing her heart or getting an infection. Oh yeah, the anemia. What a long strange trip it took to get to that diagnosis.
It all started a couple months ago. Heidi couldn't run very well. Then she couldn't walk uphill. Then she started complaining that her heart was pounding just lying down. A trip to our primary care doctor wasn't much help. The doc didn't think anything was wrong, but based on a family history of heart disease, Heidi convinced the doc to let her wear a 24-hour heart monitor. That showed an "irregular heartbeat." How indefinite. Part of the problem was Heidi's pulse rate. All her life her resting pulse was usually in the low 40's. A pulse in the 60's was really racing, but the doctor wouldn't buy it. She thought that was normal. Still, since the heart monitor showed "irregularities," it warranted a trip to the cardiologist.
By this time Heidi's ankles were swollen. I thought it made a lot of sense to get a blood test, thinking there was some electrolyte imbalance. In retrospect, that is exactly what was needed. I didn't have the diagnosis correct, but I guessed right on the diagnostic. Unfortunately, Heidi wasn't insistent enough with the doctor, so no blood test was ordered.
The cardiologist ordered an ultrasound of the heart to examine flow and ultrasound of the legs to look for clots. I suggested blood test to Heidi several more times (yes, I get to say I told you so a few more times), but Heidi didn't suggest it and the cardiologist didn't order one. I believe the appropriate analogy is: when your only tool is a hammer, all problems look like a nail. The cardiologist nailed this one as a cardiovascular problem and ordered an angioplasty.
One week ago today we arrived in the hospital for the angioplasty. First thing to do before surgery is to check the blood. They drew blood and then we waited. Thirty minutes later, the nurse came back and told us they need more blood for additional tests. I wonder if they teach how to tell white lies in nursing schools. Finally the blood results came back for the second test and the nurse asked, "How long have you been anemic." Thinking they got us mixed up with another patient I quickly replied that she is not here for anemia. The nurse gave us that look, well, that other look that also must be taught in nursing school.
Then Heidi got put on a bed and hooked up to an IV. Actually, they put the needle in her arm but wouldn't hook anything up. Everyone knew she needed blood--the nurse emphasized many times that her blood count was dangerously low. But until a doctor showed up, no blood would be given. Finally the cardiologist showed up and was informed the angioplasty decision was a bad one. He wouldn't order a transfusion because that wasn't his area of expertise. The staff hemetologist was summoned and promptly showed up 7 hours later.
During this time I was asking pointed questions to everyone in a blue smock about how safe it was to be withholding food and water from someone who fasted all night and came in with a blood count that was dangerously low. Heart-attack risking low. The nurses gave that other look, acknowledging that everyone knows what is needed--even someone who isn't trained in medicine--but they are powerless to take step one.
The transfusions started flowing about 2pm. I went to work. They managed to infuse two pints that day. I came by the hospital after work to check in. Heidi said her urine was really dark because she hadn't had any water. She also hadn't had dinner. So I asked the nurse for food and water. They found some leftover sandwich dinners. Then I asked for water. Then I . . . let me think . . . yes I believe I asked for water. Again. And the water arrived.
I mentioned this poor service to the hemetologist the next day. It wasn't received very well. So just for the record, let me explain my position on this. Even though the hemetologist won't read this, I need to write it down. This is therapy for me too.
I don't expect the nurses and nurse techs to be restaurant servers. My point to the Hemetologist is that she needs to think about treating the whole person, which includes intangibles like how hard it is to get food and water. I accept that those things aren't going to be readily available as they are at home. I tried asking questions such as, "Explain to me why being in the hospital is better than being at home." Okay, it's not really a question, but a statement.
So in the end, Heidi stayed 2 nights in the hospital and took in 4 pints of blood. They extracted bone marrow, a stool sample and many blood samples. She looked much better after that, ankles reduced, skin color better. Her heart rate was back down in the low 50's. She came home and we started researching.
One thing was clear. We would not be starting treatment at that hospital. We would not be going back to our primary care physician. A clean break at a new hospital. University Medical Center (at the University of Arizona), here we come.
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